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invisible illness

Day 2 of Dblog Week 2015 is about those things that we keep to ourselves, and don’t necessarily like to talk about out in the open. Many of us share lots of aspects of our diabetes lives online for the world to see. Today we get to discuss some of the aspects of diabetes that we choose to keep private from the internet, family, and even friends. Why is it important to keep things to ourselves?

Recently I was asked to complete a survey on employee demographics. You know, the basic questions that it doesn’t take anything more than looking in a mirror to answer. Male, caucasian, brown hair, eyes that change color, glasses when I remember where I put them, no piercings (just holes where they used to be), tattooed, sneakers > dress shoes, untucked > tucked, tie over top button, and plaid if there is ever a choice.

Okay, so maybe they didn’t ask all of the questions that would lead to those answers, but for an employee demographic survey, it didn’t take long to get real personal. One of the sections asked me to voluntarily self-identify any disabilities that I have. I’m thinking, “Okay, so they want to know if I’m physically disabled, if I need accommodations to get to and fro, or something like that.” As I read through the list, I began to feel like it was less and less voluntary, and more and more accusatory.

I will be the first to say that I’m biased when it comes to surveys like this. Whether they are at work, at the doctor’s office, or as part of a contest to win a lifetime supply of alcohol swabs and cotton balls, these questions feel loaded, and require a person to think about themselves in a very particular way in order to answer them effectively. And for the life of me, I have a really hard time thinking of myself as “disabled” because of my diabetes.

I imagine many people with diabetes and other conditions on this list feel the same way. It is extremely difficult to think of ourselves as disabled, or that we might need special accommodations because we have to live with something outside of our control. The fact is, even without any of these things, any one of us could need special accommodations at any given point in time. But does that make us “disabled” because we are strong enough to admit that we might sometimes need help?

Diabetes as a disability is not something I like to think about. I don’t want to talk about it. I don’t even want to imagine it. Even if, in reality, diabetes or complications thereof may become a disability for me, it is not something that I am willing to give more than just a brief moment of panicked thought about.

Diabetes is challenging, but so is PTSD, depression, MS, epilepsy, cancer, and every other alleged disability on this survey. Yet, having any of these conditions does not make us disabled. As much as a disability is a physical challenge, it is also an allowance that a chronic condition is strong enough to limit us from doing the things that we accept that we are capable of doing.

For now, for this survey, I don’t wish to answer. None of the items on this survey, regardless of how many I may have personally, are anything that I am willing to accept as a disability. That does not mean that I may not need special accommodations from time to time, but that simply means that I’m human, not that I’m disabled. We all need help and special accommodations sometimes, and we shouldn’t be labeled negatively because of those needs.

Lately, I’ve been zig-zagging all over the place. One such zig-zag took me to the 1-year anniversary celebration of Bringing Science Home, a joint effort between USF Health and The Patterson Foundation that aims to revolutionize what it means to live well with chronic disease and invisible illness.

Bringing Science Home’s Mission Statement
“To empower people touched by chronic disease to live optimistically and to create a new model for chronic disease education.”

I get to sit through a lot of health and medical presentations, and I get exposed to all sorts of ideas about how to treat patients, and the roles that health professionals play in educating people with chronic illnesses. Sometimes I am moved by what I hear so much that I have to fight the urge to stand up in a chair and applaud; other times I am moved in the opposite direction, and I have to fight the urge to jump up and interrupt the folks who are doing the talking and dole out a bit of education myself.

I can really get behind what Bringing Science Home is doing. Finally, there is a group that is getting organized and making efforts to bridge the gaps in areas of life with chronic illness that our current systems too often neglect.

Imagine you are a young adult in today’s world. You have just graduated high school, and are off to college to pursue the dreams of higher education. The world is your oyster! You get to set your own class schedule now, pursue your own interests, meet new people, join clubs and organizations, go to parties, stay up all night cramming for that big test you have tomorrow, maybe find a job, meet someone that fancies you and start a relationship. The sky is the limit!

If you have diabetes, you also have to make sure that you are doing what you need to do on that front as well, so that you are able to have all of the adventures of a college education. Before, when you were at home, it might have been easier. Your parents may have taken care of making sure you have insulin, diabetes supplies, test strips, and regular visits to your diabetes doctor, eye doctor, dentist, etc. They also probably helped a lot with making sure that you had the proper foods to eat, and that there was always a juice box or something nearby to treat a low blood sugar. Life in college is different: It’s all on you now.

Add those two together, and it is A LOT for a young adult to have to deal with. Keeping up with all of the diabetes stuff, plus all of the college stuff, it’s no wonder that most people with diabetes in college find that their control starts to slip. Enter Students With Diabetes, a group of people whose aim is to create a community and connection point for students with diabetes on college campuses. That’s right, “campuses.” Plural. This is not an initiative restricted to just the University of South Florida where Bringing Science Home lives. At publication of this blog post, Students With Diabetes is on 28 college campuses across the nation, and growing!

How amazing to be able to meet other people, with diabetes, who are going through this incredible transition and learning experience, and not feel like we have to hide our condition! Typically, we learn to hide and suppress our own needs so that we better fit in, whether we’re in college or just in normal day-to-day life. Being shown through our interactions with others that we don’t HAVE to hide is really what living well with diabetes is all about.

Bringing Science Home is heavily focused on life with diabetes, but it is even more about helping people of all ages and with all chronic illnesses get the help and support that they need to thrive. Whether you are Students With Asthma, Students With Diabetes, or at another life stage or have another chronic illness that doesn’t get the support it deserves, I am so very encourage by what Bringing Science Home is doing, and am confident that efforts like this are the future of living well.

I hate calling diabetes an illness. It implies that I am sick. I feel like sick should be reserved for people that are in dire straights, in need of immediate medical attention. We’re all patients in some way, shape, or form, but not all the time, and certainly not every day. Still, there are chronic conditions that some of us have to operate with, and in honor of Invisible Illness Week (which was actually last week, but humor me anyway), here is a list of things about mine that maybe you didn’t know.

1. The illness I live with is: Type 1 diabetes. Simply put, my body does not produce insulin. Not even a little. Not even at all.

2. I was diagnosed with it in the year: May 11, 1981

3. But I had symptoms since: I was two years old when I was diagnosed. You see, what had happened was I was minding my own business out in my yard, playing with my ball, just doing my thing. Then this girl comes along with her milkshake, and all these other boys showed up in the yard. Next thing I knew, I had diabetes. True story.

4. The biggest adjustment I’ve had to make is: I make adjustments with diabetes every single day. It’s a disease that requires near constant adjusting. I have to make adjustments in the amount of insulin I take based on what I eat, how active I am, what kind of activity I am doing, if I am sick, and sometimes for no reason at all. Every single day is different with diabetes, and the biggest adjustment is accepting that life is not scripted.

5. Most people assume: That if I’m having a low blood sugar, I need insulin. That is exactly what I do NOT need when I’m low! Insulin is a hormone responsible for lowering blood sugar, not raising it. Do not touch my insulin pump…EVER. If I am low and need your assistance, I need you to help me get something in me that is easy to chew and swallow that has glucose or sugar in it to get my blood sugar up fast, such as glucose tabs, juice, or even a regular Coke (not Diet!). If I am unresponsive, or you cannot get me to cooperate, please don’t hesitate to call 911 and ask for help. I’ll thank you later.

6. The hardest part about mornings are: Everything. I hate mornings. Especially before I’ve had my coffee. Sometimes the grumpiness is exaggerated by an early morning low or high blood sugar, making me even more…um, difficult. See #5 above for what you should do if I’m low.

7. My favorite medical TV show is: House. But that is primarily because of Olivia Wilde. (What? There’s more to life than just diabetes!)

8. A gadget I couldn’t live without is: My blood glucose meter. I could live without my pump (if I absolutely had to), as long as I have some way to inject insulin. And I could live without my CGM (Continuous Glucose Monitor) if I had to. All of these pieces add up to optimal diabetes management (for me, YDMV), and I hope I never have to live without any of them. But without my meter, I would have no idea what my blood sugar is, and I would have no way of knowing what action I need to take to manage my diabetes effectively. In essence, without my meter, I would be blind. (Diabetes pun not intended.)

9. The hardest part about nights are: Sleeping. Not only do I feel like sleep is the single most biggest waste of time ever, it is also dangerous for a person with Type 1 diabetes because it is when we are most vulnerable. Sleep is the time when our blood sugar can drop or rise without our being aware, and without the ability to correct it. Too many people, adults and children alike, have been lost to Dead in Bed Syndrome. This is reason enough for why we need a cure…NOW.

10. Each day I take no pills & vitamins. (Just insulin. And awesomesauce.)

11. Regarding alternative treatments I: The treatment for Type 1 diabetes is insulin and monitoring your blood sugar closely, period. The alternatives are health complications and death. I have full faith that science will one day deliver a cure for diabetes. Until then, no amount of exotic fruit or juice from a berry whose name I can’t pronounce is going to get us there. We absolutely must take insulin to keep us alive and well. Still, insulin is not a cure. Neither is cinnamon.

12. If I had to choose between an invisible illness or visible I would choose: Definitely invisible. I appreciate the choice of how visible or invisible I want my diabetes to be. Though I normally don’t, if I choose to hide my diabetes, I can.

13. Regarding working and career: I’m a medical librarian, a diabetes blogger and advocate, I teach, I speak, I travel, and I do anything that anyone else can…and I do it with Type 1 diabetes. I would love to someday have a job working closer with diabetes, on a diabetes hub, maybe with a company that focuses on diabetes, or that will work with me to work with others with diabetes. I absolutely love meeting other people with diabetes, sharing with them, helping them, and seeing that look when a parent realizes that their child with diabetes is going to grow up and be okay, or when that adult with diabetes finally finds someone else to share with who simply gets it.

14. People would be surprised to know: That even after more than 30 years with diabetes, there is still much of it that I can’t explain. For example, how can my CGM tell me that I have a “Low Predicted” and then an hour later I’m high with a BG of 170 mg/dl? Diabetes is pure nonsense sometimes.

15. The hardest thing to accept about my new reality has been: It’s not new, but I still can’t accept that there is anything that I can’t do because I have diabetes. Yes, this gets me in trouble sometimes. No, it doesn’t stop me.

16. Something I never thought I could do with my illness that I did was: I’ve never believed there was anything I couldn’t do with diabetes. Still, I like to push the envelope. Skydiving is fun.

17. The commercials about my illness: When I see a commercial about diabetes, I feel like it is targeting the vast majority of people who have Type 2 diabetes, and usually an older audience. I like Wilford Brimley and all, but that isn’t my generation, so I really wish someone would do something that appeals to those of us with Type 1 or Type 2 diabetes who are under the age of retirement.

18. Something I really miss doing since I was diagnosed is: Life with diabetes is all I’ve ever known, but I miss what I imagine it is like not having to carry so much diabetes stuff around with me. Sometimes I feel like the trash lady from Labyrinth, especially when I travel and end up carrying enough diabetes supplies to last me for two months, even though I’m only going to be gone for two days.

19. It was really hard to have to give up: Although I don’t think my personality is that of someone who would thrive in the military, it does sometimes aggravate me that diabetes took away the option for me to join a branch of the armed forces. Still, I appreciate that I am able to be here, alive and well, so that I can appreciate all of those who have.

20. A new hobby I have taken up since my diagnosis is: Blogging and engaging with the Diabetes Online Community (DOC) has been one of the most rewarding aspects of my life with diabetes so far.

21. If I could have one day of feeling normal again I would: I don’t feel abnormal, except when my blood sugar is too low or high. I wouldn’t be opposed to a day without having to monitor my blood sugar and every single thing that I do and eat. If I could have that, I’d probably just spend all day pigging out in the candy shop at Walt Disney World.

22. My illness has taught me: Patience, and the fact that I don’t have enough of it.

23. Want to know a secret? One thing that people say that gets under my skin is: “How sick are you?” I want to really make them feel awkward and answer that question with something akin to, “Well, at night I dream of riding horses naked in the rain, while hunting dinosaurs with rocket launchers, and then after a good hunt sitting down to a feast of buffalo pterodactyl wings and celery sticks. With ranch dressing.” I’m weird.

24. But I love it when people: Take the time to ask me questions, and clarify what they know or thought they knew about diabetes.

25. My favorite motto, scripture, quote that gets me through tough times is: “You can turn painful situations around with laughter. If you can find humor in anything, even poverty, you can survive it.” — Bill Cosby

27. Something that has surprised me about living with an illness is: That most of the time I don’t feel ill from it. Awesomesauce!

28. The nicest thing someone did for me when I wasn’t feeling well was: When you have a low blood sugar with diabetes, it tends to wreck all plans of whatever was happening prior to that moment. I am always and eternally grateful for the folks that put me first when I have a low blood sugar and need a little help. Here is one such story.

29. I’m involved with Invisible Illness Week because: If just one person reads this and learns something new about diabetes, then that is one person who is more empowered than they were three days ago when they started reading this list. (It’s a long meme!)

30. The fact that you read this list makes me feel: Grateful. Whether you have diabetes yourself, or someone you care about has it, I hope you were able to take away something worthwhile.

I think it will be interesting to look back on these answers and see how and if they change with time. Are you curious? Do it!

You’ve been a part of my life for as long as I can remember. It seems as if we’ve always been together. Even when you weren’t physically present, or I wasn’t paying attention, you were never far away.

There was a time when I was afraid of you. Your temper and recklessness frightened me, and how it seemed like you could dictate how I should act at any given moment. Your lows, your highs, I was there for them all. I never left your side, just like you never gave me the choice of you leaving mine.

The thing is, times have changed. I’m older now, wiser now, more experienced now, and I realize that it is my choice how much you are present in my life. Whether you are physically here or not, you will always be a part of my world, because you always have been. In many ways, I am grateful for that. You have taught me things that I couldn’t possibly have learned on my own. You have taught me patience, the value of hard work, that I will have hard times, and also that I will overcome those hard times.

But you don’t own me.

I am me. I cannot do anything about the past, but I have full control of my present, and my future. Blaming me for whatever happens to you is as futile as me blaming you for what happens to me. The blame serves no purpose, and doesn’t change anything. I choose to include you in my life as I see fit. Maybe I choose to have you attached to me, or just around to make a point when I need your input, or maybe there are times that I celebrate you and the community that you’ve inspired. But I refuse to carry on as if you are more important than I am.

I MUST come first. You don’t own me.

If I’m being totally honest, I don’t really mind sharing my world with you. Through you, I have met so many wonderful people who mean the absolute world to me. I wouldn’t have met them without you. Just like you, they inspire me to do better. They inspire me to rise up from all the things that hold me back. They inspire me to accept the things I cannot change, they give me the courage to change the things that I can, and the wisdom to know the difference.

I’m learning the pattern of things as time goes by, and how to anticipate what is going to happen next. Still, I stumble. As much knowledge and foresight as I have, things that are completely outside of my control happen, and often I am asked to take on the responsibility of those consequences, as if they were somehow my fault. I feel like you put that burden on me more often than not.

Still, you don’t own me.

I can carry the burden. I’ve got an army of people behind me that will not let me fall down. I know who I am, and I know who I am not.

I don’t always know who you are. But no matter what form you take, everything you throw at me just makes me that much stronger, because I am in control.

You. Don’t. Own. Me.

This post was inspired by the song “Dear X (You Don’t Own Me)” by Disciple, off of their album Horseshoes & Handgrenades.

I can feel it. It is slithering in like a snake through murky water. It makes little ripples as it moves in, just enough to sense it if you’re looking for it, but not enough to visibly disturb the peace and calm of everyday life. It is sneaky, resting still when you’re looking for it the hardest, hiding in plain sight. When you’re back is turned, it is busy, wrapping itself around everything that is good and dragging it under the surface, dominating.

It makes things heavy, without trying to lift anything. It makes my heart pound, even when I’m calm. It makes me want to cry, but the tears just won’t come. It makes me want to scream, but the effort is too great. It makes me want to fight, when I have nothing to fight about. It makes me forget hunger. It makes sleep something that I can only appreciate because I hear others talk about it.

It is awful.

It makes things awful.

It makes me feel awful.

After all my years with diabetes, it wasn’t until very recently that I learned that depression and diabetes go together like stink and manure. A quick Google search will tell you that depression from diabetes is due to the the daily stress of diabetes management. All the pricking and poking and stabbing and pinching and squeezing and dabbing and dripping and wiping and changing and checking and fixing and… Okay, I can certainly see how someone would get to that conclusion. Diabetes management is exhausting, and maybe that is part of the depression and diabetes picture, but it isn’t all of it.

Some sources say that it is the consequences of diabetes that drives depression. Things like nerve damage, loss of sight, loss of feeling in feet and hands, and weight gain all contribute to this sense of hopelessness. Having had diabetes for 30 years, I don’t subscribe to that. The consequences of diabetes certainly are nothing to shrug off, but I know many people with diabetes today, and those that do have diabetes complications definitely do not let those complications rule their lives. These are some of the most admirable people I know, who carry on in a daily pursuit of contributing to the world and helping other people. That is their focus, so no, I don’t subscribe to the “Oh, woe is me…” reason for depression when you have diabetes.

Sources even say that depression is the reason for depression with diabetes. No, that isn’t a typo or me repeating myself. Many sites, including the ADA, say that because of depression we slack on good diabetes care practices like regular blood glucose testing, eating right, routine exercise, and sometimes even insulin dosing. While slacking off due to depression our health declines, and then we feel bad about it, unintentionally making matters worse.

Something that doesn’t get reported enough is the science that also comes into play with depression and diabetes. In Will Dubois’s book “The Born-Again Diabetic,” he points out the often overlooked malfunction in the serotonin level production of people with diabetes, which can affect mood and cause depression. Will believes that all people with diabetes should be on anti-depression medications, and I’m starting to agree with him. Diabetes is hard enough without having to deal with feeling awful about it for no apparent reason.

The problem I have with depression, besides the general feeling of “blah” that comes with it, is that there is still such a taboo about it. I have a hard time admitting it to myself when I get depressed. Even now, I’m not certain that what I’m feeling is indeed depression. It could just be that I’m worn out from all the stresses of work, life, and responsibilities. Nevertheless, once I can admit to myself that I’m having a bout with depression, I start to blame myself for it. Maybe it is because I haven’t been taking as good of care with my diabetes as I could. Maybe I haven’t been making time to exercise as much as I should. Maybe I haven’t been eating as well, letting excessive carbohydrates creep into my diet more than I should. Never in all my maybe’s do I stop to say, “Maybe what I’m dealing with is something that has nothing at all to do with anything that I’ve done.”

I have felt it all day today. I’m upset, for no reason. I’m aggravated and annoyed, when I have absolutely nothing to be aggravated and annoyed about. I’m tired, yet I can’t rest. I’m not hungry, yet I haven’t had anything more than a pot of coffee today. I don’t know what is wrong with me. I just know I’m not me.

I have an endo appointment coming up in a couple of weeks, and perhaps I will ask him about it. But I probably won’t. As unrealistic as I know it is, there is a part of me that is afraid I’ll be judged as being weak because I can’t deal with things on my own; that I shouldn’t feel the way I do, and the way I feel is nobody’s fault but my own. I don’t want another prescription to pay for either, another pill to take, and another something to have to do on a daily basis. I’m also as stubborn as a mule, and I don’t want everyone trying to fix me and telling me what I need to do. I really don’t want anyone telling me what to do right now. (I know, I’m real mature like that. [sarcasm]) That sort of mentality is probably why the ADA says that depression begets depression. Writing this post took a tremendous amount of my courage, and I just don’t know if I have enough left to face depression (if that is even what this is) head on in the clinical setting.

I’m trying my best to get through this funk. As much patience as I need from others, I also need to be patient with myself when it comes to navigating my way through it all. I’m going to stop stressing over the fact that I can’t keep a CGM sensor on my body for more than 24 hours before it falls off, no matter what kind of sticky substance I put on or over it, and keep trying to find a solution that works. I’m not going to stress out over whatever my next A1C is going to be, and just focus on getting through diabetes one day at a time. I’m going to try to not carry around the guilt of low blood sugars that sometimes happen that I need help with. I’m going to start riding my bicycle again, because there is no room for all this baggage on the road bike, and it is really hard to have a bad day after you’ve started with a good bike ride in the morning. I’m going to get things that are broken fixed, so I can stop looking at broken things (like my TV, washing machine, and my old cruiser bicycle).

I’m going to do what I do best: Focus on the positive.

And somehow through all of this, I will get the most important broken thing of all fixed…me.

Not too long ago the DOC was tasked with writing about the most awesome thing we’ve done in spite of diabetes. There were so many great posts, and today’s Diabetes Blog Week topic takes that same notion of awesomeness, and gives it a twist. Rather than the awesomeness that we’ve achieved DESPITE diabetes, today’s topic is to write about the awesomeness achieved BECAUSE of diabetes.

I am who I am because of diabetes. Diabetes isn’t all that I am, but there is no way that I can say that it isn’t responsible for helping to shape who I have become.

I’ve written before about how I don’t have the perspective of life without diabetes. I was diagnosed at age two, so it has been a part of my life for as long as I can remember. To some that may sound tragic, but I rather like who I am. I don’t have any guarantees that I would like the person I might have been without diabetes being such a big part of my life.

Since struggling with yesterday’s Diabetes Blog Week post, I’ve realized as I’ve continued to reflect that maybe I’ve accepted the fact that I have diabetes, instead of hoping and pretending like it isn’t there and might magically go away. Accepting diabetes is a hard pill to swallow, and shouldn’t be confused with being happy about it or giving up hope. You have to sometimes embrace the monkey on your back to keep him from choking you to death.

The Diabetes Online Community (DOC) has been a huge part of my life in since I discovered that there are other people who go through the same trials with diabetes as me. How I live with my diabetes has changed a lot since I began sharing and being a contributing member of the DOC. I’ve pulled back the curtains on what it is like to live with diabetes, not only for everyone that reads my blog and follows me on Twitter, but also for myself. I still fall into the habit of hiding it sometimes when I shouldn’t, but I am getting better about putting diabetes out in plain sight.

As I write about diabetes more, talk about it more, and teach others about it more, I know that I will continue to get more comfortable with sharing the spotlight with diabetes. Because of diabetes, I have found a community of people who I can lean on when I stumble, and who can rely on me when they struggle. Diabetes is a condition best treated in a community. Because of diabetes I can focus my energies strengthening that community, increasing awareness, and improving the lives of all people with diabetes. Because of diabetes, I have a lifetime of knowledge and experience with this disease to share.

I recently watched a movie called “Love and Other Drugs” where Anne Hathaway plays Maggie Murdock, a character who has early-onset Parkinson’s disease. I think the movie was actually a romantic comedy of sorts, with people running around naked, and enough drugs to fill a doctor’s office. The lead character, Jamie Randall (Jake Gyllenhaal), was a pharmaceutical rep…where is your mind at?

The “I notice you have an invisible illness, I have an invisible illness too” side of me could identify with a lot of the trials that Maggie was going through, even though they were sometimes probably downplayed for the sake of the film having popular appeal. One particular bit of dialog in the movie really stood out for me, because it resonates so loud in our world with diabetes, an incurable disease like Parkinson’s.

Maggie Murdock: I’m gonna need you more than you need me.Jamie Randall: That’s okay.Maggie Murdock: [crying] No it’s not! It isn’t *fair*! I have places to go!Jamie Randall: You’ll go there. I just may have to carry you.Maggie Murdock: …I can’t ask you to do that.Jamie Randall: You didn’t.

Well break my heart. If that doesn’t connect with you, you’re cold-hearted and you need to go find a puppy or a kitten to hug on (stat!) before you freeze to death.

Think about your world with diabetes for a minute. Think about the times that you’ve needed someone, and they’ve been there, without you ever having to ask them to be. Think about the reality of knowing that there may come a time, at some point, where you will have to rely on someone else far more than you will be able to rely on yourself. Think about how guilty and vulnerable that makes you feel. It’s scary, and a really hard thing to admit to ourselves and accept. Although we strive so hard each and every day to manage our diabetes in such a way that maintains our independence and well-being, sometimes the unpredictability of it wins, and we need a little help.

Take a deep breath, because it’s okay.

Think about how lucky we are to have someone…a partner, a parent, a sibling, a friend, a coworker, a roommate, a neighbor, and sometimes even a trained dog…who is there for us, even when we can’t ask them to be.

Want to know who I admire? It’s those heroes.

Take a moment and read this post from one of my favorite bloggers, Saucy…well, her significant other, actually: FF’s Take On Diabetes